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United for Hope, Empowering through Knowledge:
Bringing Rare Diseases to Light in Cherokee Nation

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Conference Date

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Until the Event

June 12, 2025 8:00 am (CT)

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About the Summit

Cherokee Nation Health Services is hosting a Rare Disease Summit, bringing together specialty physicians, healthcare professionals, and community members to address rare diseases affecting our tribal citizens.

This event will cover key medical topics and some classified rare diseases. Attendees will have the opportunity to engage with experts through a Q&A panel featuring a neurology specialist, fostering open discussions and deeper insights. Our goal is to raise awareness and enhance support for rare diseases that impact our reservation and the wider Cherokee Nation.

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Our Schedule

Registration & Breakfast

  • 8:00 am - 9:00 am
  • Cherokee Nation Outpatient Health Center (CNOHC) Community Room ABC

Welcome and Opening Remarks

  • Beth Harp, DO, MHA – Chief Medical Officer.
  • 9:00 am - 9:15 am
  • Cherokee Nation Outpatient Health Center (CNOHC) Community Room ABC

MPS Hurler Syndrome (Cherokee Nation Citizen)- The Rare Disease Journey

  • Alex Price, Rare Disease Caregiver & Advocate
  • 9:15 am - 10:15 am
  • Cherokee Nation Outpatient Health Center (CNOHC) Community Room ABC

Opening Remarks

  • Canaan Duncan – Deputy Secretary of State
  • Chuck Hoskin Jr. – Principal Chief
  • Bryan Warner – Deputy Principal Chief
  • January Hoskin – First Lady
  • 10:20 am - 11:20 am
  • Cherokee Nation Outpatient Health Center (CNOHC) Community Room ABC

Lunch

  • 11:20 am - 12:20 pm
  • Cherokee Nation Outpatient Health Center (CNOHC) Community Room ABC

Resource Fair

  • 11:20 am - 12:20 pm
  • Cherokee Nation Outpatient Health Center (CNOHC) CNOHC End of Hallway

Breakout Session

Newborn & Rare Disease Screening Program

  • Jennifer Baysinger, Oklahoma State Department of
  • 12:30 pm - 1:30 pm
  • Cherokee Nation Outpatient Center (CNOHC) Community Room ABC

Breakout Session

Cystic Fibrosis and Clinical Research

  • Dr. Condren - University of Oklahoma
  • 12:30 pm - 1:30 pm
  • Oklahoma State University Center for Health Sciences at Cherokee Nation Lecture Hall – Floor 1

Breakout Session

Spina Bifida

  • Speaker Pending
  • 12:30 pm - 1:30 pm
  • Oklahoma State University Center for Health Sciences at Cherokee Nation Lecture Hall – Floor 3

Break

  • 1:30 pm - 1:45 pm

Breakout Session

Rare Disease Advocacy

  • Speaker Pending
  • 1:45 pm - 2:45 pm
  • Cherokee Nation Outpatient Center (CNOHC) Community Room ABC

Breakout Session

Ehlers Danlos Syndrome

  • Speaker Pending
  • 1:45 pm - 2:45 pm
  • Oklahoma State University Center for Health Sciences at Cherokee Nation Lecture Hall – Floor 1

Breakout Session

Patient Work Up and Rare Diseases

  • James Lewis, MD
  • 1:45 pm - 2:45 pm
  • Oklahoma State University Center for Health Sciences at Cherokee Nation Lecture Hall – Floor 3

Break

  • 2:45 pm - 3:00 pm

Breakout Session

CKLK5 Deficiency (Cherokee Nation Citizen) – Rare Disease Diagnosis and Journey

  • Rare Disease Caregiver & Adocate
  • 3:00 pm - 4:00 pm
  • Cherokee Nation Outpatient Center (CNOHC) Community Room ABC

Breakout Session

Newborn & Rare Disease Screening Program

  • Jennifer Baysinger, Oklahoma State Department of Health
  • 3:00 pm - 4:00 pm
  • Oklahoma State University Center for Health Sciences at Cherokee Nation Lecture Hall – Floor 3

Break

  • 4:00 pm - 4:30 pm

Closing Plenary

Speaker Q&A Panel

  • Beth Harp, DO (Chief Medical Officer)
  • Dr. Kaushik (Virtual)
  • Jennifer Baysinger
  • OU Speaker
  • 4:30 pm - 5:00 pm
  • Cherokee Nation Outpatient Health Center (CNOHC) Community Room ABC

Location

Address:

19600 E Ross St. Tahlequah, OK
United States

  • Phone: (539) 234-2273
  • Email: cherokeerdsummit@cherokee.org
Website:

cherokeerdsummit.com